A prospective longitudinal study of health-related quality of life and psychological wellbeing after an implantable cardioverter defibrillator in patients with genetic heart diseases

Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): NHMRC Project Grant National Heart Foundation Future Leader Fellowship OnBehalf Cardio Genomics Program Introduction Genetic heart diseases, often affecting young people, can be clinically heterogeneous and pose an increased risk of sudden cardiac death (SCD). The implantable cardioverter defibrillator (ICD) is a lifesaving therapy. Impact on prospective and long-term psychological and health-related quality of life (HR-QoL) after ICD implant in patients with genetic heart diseases is unknown. Purpose We aimed to investigate the psychological functioning and HR-QoL over time in patients with genetic heart diseases who receive an ICD and to identify risk factors for poor psychological functioning and HR-QoL. Methods A prospective longitudinal design was used. Patients diagnosed with a genetic heart disease for which they received an ICD, were eligible. Anxiety, depression, health-related quality of life and device acceptance were measured using validated questionnaires. Baseline surveys were completed prior to ICD implantation with five-year follow-up after ICD implant. Results Forty patients with an inherited cardiomyopathy or arrhythmia syndrome (mean age 46.3 ± 14.2 years; 65.0% males) were included. Mean psychological and HR-QoL measures were within normative ranges during follow-up. We observed significant overall improvements from baseline to first follow-up with variability increasing after 36 months. The presence of comorbidities predicted worse physical HR-QoL (p = 0.014). Other predictors were not statistically significant, although lower education and female gender seemed to be an interesting predictor for higher anxiety and less mental HR-QoL, and the presence of comorbidities for less physical HR-QoL. Conclusion While the majority of patients with a genetic heart disease adjust well to their ICD implant, a subset of patients experiences poor psychological and HR-QoL outcomes.